Abstract A009: Advocacy organizations as critical players in the research ecosystem: A case study in the value and use of real-world evidence
Authors: Kimberly L. Newcomer, Andrea Goodman, Negeen Fathi
Journal: Cancer Research (2022)

Abstract Background: Patient-reported outcomes (PROs) are defined as critical data points in the overall assessment of healthcare quality. Coupled with advances in treatment and the evolution of patient-provider relationships, there is an increased emphasis on the evaluation of patient satisfaction and wellness, often most accurately captured using PROs to describe aspects of a patient’s health status, as directly reported by patients. The importance of direct patient reporting has been highlighted by both FDA and the European Medicines Agency (EMA). The Colorectal Cancer Alliance’s Never Too Young (N2Y) Survey provides accurate, accessible, and reusable data to show trends in young-onset colorectal cancer (YO-CRC) incidence rates, patient care, quality of life outcomes and research. Methods: With a mission to support the growing YO-CRC community and understand unmet needs, the Colorectal Cancer Alliance (Alliance) launched an annual N2Y survey in 2015. Survivors and caregivers played an indispensable role in the development of this survey. In 2022, the Alliance engaged in a comprehensive literature review to analyze the ways in which N2Y survey data and publications have been cited and utilized in research, showcasing the value and global impact of survey data. Results: Data from our surveys produced 22 abstracts cited by more than 150 publications. The data provides healthcare providers and researchers with valuable information and metrics that did not previously exist from a YO-CRC patient and caregiver perspective. These reports are particularly important to patients with CRC due to the adverse effects occurring from colorectal cancer treatments. Many citations reference the reports to emphasize the need to focus on YO-CRC for a national screening program and the importance of provider vigilance towards symptoms regardless of age. Additionally, our reports were used to elucidate the need for YO centers that comprehensively address the unique needs of patients with specific services selected based on PRO data from the Colorectal Cancer Alliance. Conclusion: Innovative advocacy efforts like PRO collection from organizations like the Colorectal Cancer Alliance using methodology that is validated and systematic can facilitate efficient, life-saving decision-making globally. With careful consideration and acknowledgment of PROs, positive care experiences can develop to better clinical outcomes overall. PROs indicate the importance of teams who actively communicate well with each other and with the patient to achieve positive outcomes through personalized, precision medicine and better position future research with implications for education and practice. Going forward, the patient and patient advocacy community should work collaboratively with researchers, industry, clinicians and investigators. Citation Format: Kimberly L. Newcomer, Andrea Goodman, Negeen Fathi. Advocacy organizations as critical players in the research ecosystem: A case study in the value and use of real-world evidence [abstract]. In: Proceedings of the AACR Special Conference on Colorectal Cancer; 2022 Oct 1-4; Portland, OR. Philadelphia (PA): AACR; Cancer Res 2022;82(23 Suppl_1):Abstract nr A009.